I just can’t get over this

Becca has only been on the new medication – Onfi – since January 15. Less than a month. In that month she has done amazing. Her seizures have been fewer. She has been chatting so much. Her attempts at communication are continuous. She is so vocal. It makes me beyond happy. Only now and then do we (Daddy and I) hear utterances that sound like real words. Sometimes it sounds appropriate for the situation. For instance last night she was chatting away and David repeated back sounds like she made, He said something to her along the lines of “I don’t really know what you said”. David and BOTH heard her say “why not?” I couldn’t help but laugh. Other times we may hear “Daddy” and then a series of babbles we don’t understand. So clearly she is trying to tell Daddy something. So cute!
I got out her iPad and turned on one of the talking animal apps (for the record it was Lenord – a big blue furry monster). Becca started making her growly noises. She got such a kick out of it repeating her sounds. She would make more noises. Each time it repeated them she became more delighted. I had to restrain myself from shaking with laughter at her delight! She got more and more excited. I loved the level of cognition that I saw with this app.
I’m also seeing improvements with her daily progress reports sent home from school. (I don’t have a copy of one in front of me, so its hard to give many examples). But one continual problem Becca has is always picking the object on the right side. As near as I can tell, she is starting to do better, or at least crossing mid-line to choose the right – which means – using her LEFT hand. WOOT!

We’re still not sure why she has had some issues with her gait. She seems to have, what was best described by another parent as spaghetti legs. Especially her right leg. I took her for an orthopedic appointment this past week and Dr. Fitch cleared her. He does want her to see a PT for an AFO consult. Thinking they could possibly give her more stability. With that in mind we will see her old PT later this month. Lisa Mangino (aka Gino) is the one who saw Becca back when she was younger, but has since discharged her from PT. We LOVE Gino!

Keep up the prayers for Becca, they are working. God is doing amazing things in her life right now. (having to end this blog update – some little girl has fallen asleep in such a way that typing using both hands is nearly impossible)

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2 thoughts on “I just can’t get over this

  1. We just started Onfi also, I really think it is helping we have had only 1 major seizure and the head drops really seem to have lessened. We are fighting a sinus infection so I really want to see what this medicine can do for her when she is well.
    I am glad you are seeing great things with it.

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